pixiesmommy

We have done a variety of things and the more "natural" or holistic things have been the ones we have seen the most results with (aside from IVIG, that is.) The following have given us the most dramatic results thus far: Therapy (particularly an out-patient stint a year ago for 11 days, but otherwise once or twice a week) Feingold program (www.feingold.org) Apparently there is something to be said for low-salicylate diets in lots of disorders that are on or mimic the 'spectrum' like ADD, OCD, Tourette's and PANDAS - our most dramatic results were with eliminating artificial colors and apples, but each child is different. We also eat all organic, grass-fed beef, free-range chicken, etc. We are currently investigating whether she has any gluten issues and doing vitamin deficiency testing as well. Extremely consistent bedtimes to ensure that she gets AT LEAST 12 hours of sleep. A lot, I know, but wow, what a difference. Melatonin at bedtime Oscillo and Cold Calm for colds and flu Belladonna for fevers MSA (Meridian Stress Assesment) testing, which is an alternative sort of "acupressure" type testing for allergies and food sensitivities (showed results that we suspected and MORE, while traditional blood-test and scratch-test showed negative) --- We are currently seeking out Occupational Therapy, Nutritional Analysis and therapy, some brain-balance therapy for SPD issues, chiropractic. Will update on these as we see them in progress.

I'm not sure of her stance at the moment, but rumor has it (someone chime in here!) that Dr. Maeve O'Connor at Carolina Asthma and Allergy may be interested in treating PANDAS kids. I saw her with my own daughter's symptoms but that was 4 yrs ago and I had never even heard of PANDAS and of course she did not mention it to me. She was a fantastic listener and ran all the tests we asked her to run at that time. The office staff at their Concord office left much to be desired at that time, but things have surely changed some since then. I know she has another location in Charlotte too. You may want to check out the NC thread I started about how so many of us seem to be located or from that area. :/ Hang in there. Also, as a side note... Beth Maloney who just wrote a book about her son, _Saving Sammy_ has a Facebook page and is compiling lists of doctors for each state, so she may be a resource as well. Hugs, Manda

This is really interesting to me b/c we are in the same boat. Pixie was a very early talker (we laughed at the ped when he asked at her year checkup if she was starting to put 2 words together- that girl was putting paragraphs together by then and asking what "judicial" meant and then using it correctly!!!) But then around the same time she started having PANDAS behaviors, she started grunting instead of speaking, having huge non-verbal periods, using sign-language some instead of speaking when she was upset (which is not a problem for us at all, but it was unusual for her to sign in this manner,) and doing things like mixing up the first letters of words or speaking with baby-talk or strange accents. She also does the "listen, listen...!" thing periodically. When we saw Dr K and had printed a list of symptoms, he highlighted all of the verbal/non-verbal issues and said those are "classic" PANDAS symptoms, so the answer must be that the language center is affected. I wonder how/if therapy for this could help or to what degree? I wonder this about all therapy though since this is not really a chemistry issue so much as a swelling issue, but we plug ahead in any area that we can. Thanks for posting. Another thing to chew on...

Thank you. I would love to link this on my Facebook page. Do you have a direct link to the article by chance?

bumping this up b/c i have noticed more nc posters who didn't reply and i'm still curious...

To answer the questions: 1. We upped DD's augmentin does from 250 mg 1x a day to 250 mg 2x a day. 2. We are not PLANNING another IVIG, but we're not ruling it out either. Saturday and Sunday went reasonably well. She had one 10 minute violent outburst on Sunday, but was otherwise able to function. Today was not good. Could barely get to school for an hour and a half, violent off and on all day. We've started charting behaviors on a 0-2 scale (0 = good, 1 = medium, 2 = bad) so we can try to achieve some clarity on whether she's showing improvement or not. Nervous about the idea that antibodies die around Day 30 because that's where we are. I guess we'll keep waiting and seeing. Pixiesdaddy

I had strep ALL. THE. TIME. as a child and have had it multiple times as an adult (probably more than I know because I tend to avoid doctors for things like sore throats... well, at least until now!) I was sick a lot and had chronic sinus infections through adolescence into early adulthood (about age 11-20) and was tested for all sorts of things and told, finally, "its just the way you are" after I literally could NOT recover fully from mono at age 17 (tired, weak, etc for YEARS after.) Like ShaesMom, I had a similar rxn after Pixie had 2 strep infections in a row (probably just one long one that didn't clear now that I think about it) and woke up one morning with sore EVERYTHING (joints in fingers and toes, etc) and have been in a constant state of exhaustion and just overall "poor health" in that I never feel completely well, ever since. I also was dx'ed with Fibro last summer (by a supposed fantastic rheumatologist) who refused to dx me with Lupus because I didn't have positive bloodwork, even though I have the same symptoms as my mom who IS dx with Lupus. Anyway, all of this to say that yes, for most people this is PROBABLY true- just as most adults have gained immunity to other things (not just strep) from having been exposed as a child, BUT if you have new strains that you are being exposed to as an adult or you are immuno-compromised, then you will probably continue to have problems. I know for me, it seems to take FOREVER for me to heal from anything- getting my tonsils out 5 yrs ago to help prevent strep when I was in my late 20s!!! I was supposed to have a few months recovery time and I literally kept a sore throat for a YEAR afterwards. I've had shingles and have Raynauds, etc etc. and there is no blood test that anyone has ever run that gives an answer to why these things keep popping up for me, yet they do. I would like to hope that since they are going to grow out of this, but I'm really terrified that that is not the way it works and since there is something "wrong" in their response, or misdirected response or lack of response.... that this is really going to be something that can't be "cured" and it's all just said and done and over with.

Someone mentioned in another thread that her husband just passed away as well.

First of all, ((hugs.)) Time of year is a BIGGIE for us too. I'm no expert, but it may be that you just have to ride it out a bit. Have you tried any supplements in addition to the abx? Flax seed oil and Magnesium (Kid Calm) in particular are supposed to be helpful with tics. -Manda

We did this a year ago (before we had heard of PANDAS) to see if she was on the Autism spectrum, etc. Our results were that she was extremely gifted and could possibly have ADD. Also told a great deal about how she learned (auditory vs. visual, etc)

We got the book The Out of Sync Child Has Fun and I bought a few sensory toys from Amazon. Also the Public School called today and we have a service meeting set for 10/21 with the OT present.

I think the wisdom is to give probiotics an hour apart from antibiotics from what I have read. We use Florastor (per Dr Kovacevic) and it is a healthy yeast that can be given at the same time as abx. Pearl is the brand of probiotic that Dr Latimer recommends, but it is more traditional and would need to be given an hour apart from abx. HTH Manda

Thanks for posting this. I was just thinking the same thing last night as I drifted off to sleep, actually!

I would love any help you can offer, either via PM or here where it may help others Pixie's main issues are (not sure if these are all SPD): sunlight (particularly transferring from darkened room to outdoors) rolling on the floor/spinning/not seeming to be aware of her body spatially - clumsy but also running or flinging herself headlong into things postures where she buries her head in the couch cushions and puts her bottom in the air being sensitive and saying things are painful that shouldn't be (holding her hand or laying hand on her shoulder gently, etc) and vice-versa- falling down and really seeming to hurt herself but not seeming to feel any pain (scraping knee but not crying unless she sees the blood- the visual is the trigger not the "feeling" of it) sound- she will speak extremely loudly one minute but then have to have earplugs/headphones for "noise" that is normal volume the next minute not liking to change clothes, bathe, brush teeth, wipe after urinating I'm sure there are more, but those are the ones that we seem to deal with on a daily basis. She also has the taste thing and it has only reared its head post IVIG and we are in week 4 now. Thank you so much. Manda

Our current ENT just checked Pixie's tonsils because the ped felt she had a bit of tissue there that may be harboring strep and he asked if she had had hers frozen or lasered. He said that the "old fashioned" way of surgically removing tonsils is best because you can get all of the tissue. With hers, there is quite a bit left. I feel like I can trust him AND it makes sense to me because mine were done around the same time as hers and we both had different methods (mine was old fashioned way, hers was cryogenic) and while hers was WAY less painful (maybe because she is a child, but still....) there is NO tissue left of mine and you can actually see hers - as just a layperson looking a throat anyway. HTH Manda

I don't have as many answers as I would like, but I don't think the 'experts' do either. Per Dr K- his protocol is Augmentin for 1 year (or possibly more, but at this point he stands firm on just 1 yr) post IVIG. This, he says, is per his own studies. vs what he says the Swedo study and Latimer did/do, which is abx (not sure which) until puberty.

Mine is going to be a bit of a different perspective: On the slight chance that you don't "just" (ha!) have PANDAS but also have something that may be affected by anesthesia and/or the chemicals used in anesthesia, I would try to go as long as possible without doing it (as long as he is healthy, at least.) By this, I mean that things like Bipolar can be made worse, or can be triggered by anesthesia.

I'm interested in whatever testing we can have done (within reason) to satisfy my own curiosity as well as hopefully hit on a concrete answer (by this I mean an answer that makes all doctors believe us that something is really wrong.) I still have yet to post Pixie's entire life history with PANDAS and/or whatever else she may have going on, but the pieces of the puzzle feel like they are coming together a lot more for us recently (since learning about PANDAS.) I have had a history of strep and suffering more than most people through things like flu, etc and generally been in poor health for no reason that anyone can find, for my entire life. I struggled with aches and pains with "no apparent cause- just the way you are" according to a rheumatologist, since about the age of 12. I kept sinus infections, yeast infections and UTIs from age 12-20. I was on constant antibiotics through those years. At age 20 I developed severe candidasis and weaned myself off of the abx and made diet changes and never have had chronic infections since. I get severely dehydrated at the drop of a hat. When I was 19, I suddenly could not walk for about 2 weeks and went to doctor after doctor and no one could find the cause and told me it was psychosomatic eventually (I was having such severe knee pain that I would vomit, shake and sweat.) It mysteriously disappeared just like it appeared! Then a bout of hot flashes at age 28 and so much of my hair fell out I was clogging the drain daily, but thyroid tests all came back just fine and I was told that it was most likely depression (I didn't feel depressed!) and was put on Zoloft, which made me feel like I had to shake my head to the side constantly after just a week on it. I was told that this was impossible, that it was all in my head- AGAIN. On and on and on and on. Doctors are constantly treating me like I have no idea what I am feeling in my own body! I KNOW not to trust doctors without doing my own research and that is why I am so certain I also have to walk that same line with my daughter. My mom, last year, was diagnosed with Lupus. I have the exact. same. symptoms. but was told mine was "just fibromyalgia" and that they diagnose any chronic pain and fatigue as fibro if you fail the blood tests for Lupus. We are going to different doctors, but with the same symptoms and getting totally different diagnoses. She is offered meds, I am offered nothing (not that I would take meds anyway, but just saying for comparison's sake...) So there is definitely something genetic going on in my family and there is definitely a possibility that that affects Pixie. I figure, too, if she is going in for bloodwork for Dr K or whatever anyway, why not have them draw more for investigating and testing and TRYING to get more answers? I don't see how that hurts. If it means that we qualify for a numerical code now because of it, that they can write on a piece of paper and it means money for meds or therapy or whatever... I don't care. All I care about is helping her survive, and believe me, with the OCD and the rages and the hallucinations and the fevers... she needs a lot of help to survive right now.

We are in Elgin, IL We are not supposed to have her on any meds other than abx now while we wait to see what IVIG does (3 months.) We go back to Dr K next Friday for our 1 month follow-up. The thing about Benadryl is that there is no way she is willing to take anything while in an episode where she is raging, so that rarely does me any good.

What is ABA? I'm in IL. We have tried to find ANYONE who can help to come to our home and no luck w/OT or therapists like psychologists so far. She is hard to get out of the house at this point. Thanks! Also, Florastor is what is in her shake and it is fine with abx at the same time. I add a little bit of Kefir to thin it out, but I will discontinue using this at the same time as abx in case it is causing a problem.

Pixie did once on her neck only

I have Pixie's records and almost every time I took her in for a stomach ache and she would be tested for strep (our old ped always tested no matter what the complaint) she would come back positive for strep. The ped said that some kids complain of stomach ache instead of/alongside a sore throat. Now, having said that, I wonder in his situation if maybe he carries strep in his gut and when/if he is vomiting (that's what you mean by "flu" I guess?) then he is bringing it up into his throat and then gets the sore throat? Or maybe the stomach flu weakens his immune system and he picks it up while under the weather? Those are just guesses...

We have been searching for an OT, but can't find one. The public school is supposed to get us a service meeting for eval and have an OT there, but we are on a waiting list for now... In the meantime I've been trying to explore this on my own and we have found a chiro who does some work with SPD kids, so that is good. I've been reading about how this can help with rage attacks and how being more away that they are "in" their body can stop them (someone mentioned a weighted vest.) What do you do for your child's sensory disorder? Are there things that help? Things that seem to always trigger? For Pixie, sunlight is a BIG one. She will have a huge meltdown because she hates bright lights, so stepping into sunlight from a dark house or museum or whatever... watch out!!

No, she was tested w/ a pediatric neuropsychiatrist last summer and he said she is definitely NOT on the autism spectrum. We do 2 smoothies a day. Smoothie #1 in morning Kefir (no strep strain) Fruit (varies) Flax seed oil Florastor Augmentin 250mg Smoothie #2 at night Kefir Fruit Flax seed oil Florastor Melatonin (1/4 tablet) Kid Calm and she takes a Pearl (no strep strain) probiotic We have done strict Feingold stage 1, so I know what fuels the fire now and avoid those things, namely Apples. We called Dr K today and he said to give her a second dose of Augmentin 250mg at bedtime as well, for 10 days, as I and my 2 yr old have sore throats. Also got in touch with a chiro that I am hopeful about who knows about PANDAS and called me tonight and just CHATTED for half an hour! He wants her entire history and records to read, all her films, blood work, etc etc. He and his associate do nutritional therapy, acupuncture and work on communication between right and left brain to help with SPD/SID issues. I'm very optimistic- he sounded like he knew his stuff and was really caring. No, she does not do anything on her own other than go to the bathroom. She won't even do that at night before bed. Everything had strict OCD routines and she has to have us by her side 24/7 (well, she does sleep on her own - thank goodness!!!!) and is literally attached to the hip of some adult all day long every day.

That makes me suspicious that he isn't having a bad rxn to the steroids. All PANDAS stuff aside, *I* personally cannot do Prednisone because it makes me so sore from head to toe that I literally cannot walk. They put me on them when I have allergic rxns to antibiotics and it is HORRIBLE. The only joint pain that Pixie has complained about is knee pain and steroids did nothing for that, but with IVIG, it was gone almost immediately.